Tuesday, November 24, 2009

Congenital Heart Disease is My Life...

CHD is my life; it is all I’ve ever known. I was born into this; I didn’t have a choice or say in the matter. I had to fight many times to live: from 11 weeks old in serve heart failure and dying, to a 50/50 chance for my Fontan when I was a little over 2yrs. old, but I survived; I’m here. Without those life saving surgeries, procedures, medications, machines, doctors, and family I wouldn’t be here today. There is a life after surgery when you have a serve Congenital Heart Defect, but the memories and the trails of day to day trying to go on like nothing has happened is not something you can do. Yes, I’m ever so thankful for the surgeries I’ve had that have given me a chance at life, but I continue to struggle with my CHD and will the rest of my life…

From the time I wake up in the morning till the time I go to bed I have little reminders that I have a CHD, that each day I’m ever so blessed and grateful to be alive. These reminders also keep fear with me, fear of the unknown and worry, things that are so hard to push completely out of my mind.

When I wake, as I get dressed I always see those scars on my chest, I always glance at them. During breakfast I take medication that helps my heart continue to be strong. While walking I sometimes have to stop, I get out of breathe, it hits me again. When I get stressed, I get muscle spasms around my heart (was dignosised with these last year), again it reminds me. At 7 O’clock on the dot every day my cell phone alarm goes off, time for my most important heart med, my beta-blocker. Before bed, I automatically take two baby aspirin with a snack. When I change into PJ’s, those scars make another appearance. As I lay in bed my chest can hurt, my heart is adjusting; it’s beating slowly. I pray, I close my eyes, I never forget. My heart reminds me every day of my life, it affects my life, and it will always be a part of my life.

This CHD has lead to my anxiety disorder, has helped in my stubbornness, has helped me be blunt about things, has given me nightmares, has given me a hidden anger, and has helped me in my very emotional personality. All these negatives of me have been affected by my CHD and are now forever part of my life, BUT…

Though my CHD is a big part of my life and it affects every part of it in some way, I try not to let it define me or hold me back from achieving my dreams. This CHD, though has affected me in negative ways throughout my life, it has also affected me in many positive ways too.

My CHD has taught me to be more understanding of people around me. It has taught me to not take life for granted and to love the people you care about with all your heart. It has taught me that family and close friends are the most important things in life. It has taught me to enjoy the simple things in life and to enjoy the small positives of everyday. It brought me together with so many wonderful and amazing people. It has given me a motivation to help others and to always have faith. Lastly, my CHD has affected my personality in the best way possible as it has helped shape my loving, caring, kind, sweet, inspirational, brave, and strong character.

Just because you have a chronic illness doesn’t mean you can’t live, laugh, love, have fun, and make memories…

My CHD will never go away, but I will take what I can from it and keep living my life to the fullest… I LOVE my life and I consider my mended heart a gift!!!

With LOTS of Hope, Love, and Faith,


  1. Beautifully said Lauren! Thank you for sharing how CHD affects you!

    Stef, Ryan, Wyatt and Logan

  2. Wow Lauren, that is powerful. I really like how you related that it affects your daily life. I think, honestly, I guess I never thought or have yet to experience with my daughter all of these emotions you are relating. It makes me sad to know you are so affected by it, the constant looming reminder of it. I think that as a person without a CHD those words of yours are powerful, maybe enough to move some legislation or action. I know you are a great inspiration and warrior for CHD. Keep up the great work! Especially as a mother I appreciate ALL your insight. I wonder, do you speak openly with your mom about your feelings or do you try to minimize them with her? I want my daughter to know I will always be here for her as I'm sure your mom is for you. Just wondering if you hold back? Maybe because you mention you are more blunt about things you don't. You are an amazing young woman! Glad I've had the chance to "meet" you.

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